In this chapter, we report findings from a three-year, survey- and interview-based study involving 538 families bringing up children with disabilities in Alberta, Canada. The focus of the study was on the everyday challenge and accomplishment of sustaining a routine of daily life. The families who participated in this study were diverse, yet they struggled with many of the same questions and challenges. Four over-arching and inter-related challenges emerged from our analysis of the interview data. These are difficulty balancing the competing needs and wants of their children; tension between wanting to protect and wanting to integrate their child and family into the community; conflict between earning and care giving activities; and, trouble accessing and navigating supports and services. This chapter includes a small sample of illustrative family stories. The study findings suggest that parents are striving but struggle to meet normative expectations, that is, to simultaneously do all they can to help their disabled child and create a routine that balances the needs and interests of all their children. One conclusion is that service systems and professionals can help and or hinder families as they strive to create and maintain a daily routine that is fitted to the local ecology and family resource-base, and congruent with their values and goals, and with the needs, interests, and competencies of family members.
This research was supported by grants from the Social Sciences and Humanities Research Council (SSHRC) and PolicyWise for Children & Families (formerly the Alberta Centre For Child Family & Community Research). We would also like to acknowledge former graduate students Erin Duebel, Miriam Parakkal, and Erica Kronstal for their contributions to the participant narratives presented in this chapter.
McConnell, D. and Savage, A. (2017), "The Ecocultural Project of Family Life", Working with Families for Inclusive Education (International Perspectives on Inclusive Education, Vol. 10), Emerald Publishing Limited, pp. 37-61. https://doi.org/10.1108/S1479-363620170000010008Download as .RIS
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